Doing Great at Home

Just a little update.

Darling Brosie has been doing very well since being home. He continues to be down on his O2 needs. He is active and playful and back to his usual tricks of partying all night, much to my dismay.

HOME at last!

I am writing this from home sweet home with a snoozing Ambrose on my lap.

Since we left the hospital he is down on his O2 need and down on his pressure support.

He must be happy to be home!

Hard day for Daddy

Brosie' home ventilator: The Pulmonetics 1150

Crazy days-

Yesterday Ambrose's Daddy got in a car accident. He was banged up quite a bit but lucky to have not been injured seriously. His truck however is totaled.

Ambrose is doing better and on track for his planned homecoming on Tuesday.

He is adjusting to his ventilator. I think he was having some plugging issues. No one ever listens to me when I tell them that he needs higher than normal temperature settings on his humidification. They wait until he starts to dry out and have troubles. The pulmonologist was in agreement with me on that and since it has been turned up, his secretions have thinned and he has stopped having desats. He has also come down some on his O2. I have learned that the frequency and size of his breath changes the amount of O2 his is receiving.

I also wanted to mention that he has his flexion/extension CT scan a few days ago. As predicted, it showed a very abnormal C-spine with narrowing at the base of the skull, but they felt it did no look unstable. Interestingly it also revealed that he has an ear infection. (10 days of fevers, multiple labs, negative for everything and no one looked in his ears.)

On a happy note: Ambrose's Mommy received an acceptance letter from Vermont Technical College for their nursing program.

What's wrong Brosie?

Not sure what is going on but Ambrose is again having a difficult day.

He has been on his home vent since Thurs afternoon. Seemed to adjust to it just fine.

Then he started needing more O2 (up to 4L from 1L) to keep his sats up and was quite agitated. He sounds pretty clear. They took an Xray and it looked pretty much the same. Scoped his trach - looks fine. He had a low grade fever. Got some Tylenol and settled down but continued needing more O2. They also increased his pressure support from 5 to 8. They are not sure what the problem is and say it may be just him adjusting to the different vent but I'm not sure I buy that.

Mommy's Little Spark Plug

GRRR!

...Well that did not go so well. I had to fight to get heard by a Dr. who seemed annoyed by my questions. He put in a cuffed trach which is 2 whole sizes bigger than his regular uncuffed trach. I fought back tears as it caused him to bleed. I do not want to have to do this to him myself and on a weekly basis. (also it can possible harm his trachea, is uncomfortable to him, is torturous to put in, and seems to take away his voice.) They are assuming that he will continue to need a cuffed trach although he did not have one before, he has an acute illness and he is getting better. No one has really explained to me the reason for this assumption. I have been aware that he could potentially need one if he were to use pressure support at home. But he is not on pressure support. So perhaps he will not need it for long but they did not seem to want to explore what the options would be even though he would likely require a custom trach which takes weeks to order.

Also the Dr. who wants to manage his home vent usage has not been communicating with me. The other Dr. who was willing to do so has been checking in on us frequently.

The medical supply co. respiratory therapist worked hard to get a vent available to us quickly and it will be brought here sometime tomorrow for him to get used to and me to get training on. Unfortunately we can not go home until Tuesday as that is when she is available to come set it up in our home, train us and the local branch's resp. therapist. I don't think he really needs to be here that long but I am glad we actually have an end point in sight. Being here is a huge upheaval to all of our lives. I want to get him out of here before he picks up any hospital bugs.

It's 4:15 pm. I had trouble sleeping thinking of ?s I wanted to ask the ENT Dr. who was supposed to come yesterday. I came in at 8:00 a.m. because I didn't want to miss him. I am still waiting.

The most annoying thing is I he was in the PICU several hours ago to see another patient.

Gotta go. He's here.

I was told it was time to post some pictures.

Top is Brosie's friend and EI Mary visiting.

Then a ticked off AMBROSE ALMIGHTY

Bottom is the dry erase board in his hospital room with my words and a diagram his resident drew to explain his bicarb level increasing to counteract his elevated CO2.

Today has been a bit frustrating although Ambrose is doing well, Thankfully!

I have been persuing getting a home ventilator for Ambrose since we have been here. It was brought up in the past when he needed CPAP but we wound up opting for getting CPAP through a different system. He weaned off of it but we continued to use it at night preventatively. When he was sick we used it all of the time. One of the problems is that it is not portable. I didn't want to take him off of it to go to the Dr. Also, it is not actually delivering the amount of PEEP it is supposed to because we do not have the high flow it needs to work properly. Additionally with the occasional episodes that he has had where he required some bagging, I feel that the ability to give him some pressure support would be a good thing. It seems that everyone was in agreement about it and I was trying to prevent his discharge from being held up because no one initiated the process of ordering this equipment and arranging for training me, etc. I've been asking about it for a full week. Today, after really pushing it has only just now been ordered. I'm told it can take a week unless they actually had one in stock, which I won't know until tomorrow. So frustrated! We need to get home and he is doing much better.

An additional issue that needs to be figured out is his trach. His anatomy is so unusual that standard trach tubes often don't sit right in his trachea and can occlude causing him distress. The reason is not always apparent to those around him who wind up giving him additional support that he may not need when the problem may be simply: airway.

He has been using a custom trach that is longer and has a sharper curve than usual. The ventilator has a problem with the air leak around that trach, so he needed to have a cuffed trach put in. It is hard to get in and causes bleeding. The cuff is inflated so there is no air leak, allowing the ventilator to work more efficiently. Of course, it is not custom made for him, so there are issues as mentioned previously. One being that he seems to need an unusually high amount of air in the cuff. There have been a few times he has seemed to be gasping through his mouth which shouldn't happen when you have a trach. The solution had been to go up to a bigger size. Now they are talking about a bigger size yet. I'm not sure if he is going to need this for home. I really don't want to have to force a large cuffed trach into him, causing him to bleed. They ordered a custom cuffed trach but it takes weeks to get and they've changed size since then anyway. I'm waiting for the ENT Dr to come scope his trach again. Of course he is looking through it when he is in a perfect position, not necessarily how it looks as he is moving throughout his day.

Right now he is off on an expedition to get a flexion/extension CT scan to look at his C-spine.

Freak fever

I had to run home today. When I left Ambrose was looking good. Then I got a call that he had a 102.5 fever. They took a new set of cultures and switched antibiotics. When I returned he was once again looking good. No more fevers. What was that all about?